My name is Cathy and I am 63, single and have lived alone since the death of my mother in 2020. I was a carer for my mother in her final nine years when she developed Alzheimer’s. I live in Sheffield in the UK.
I have been unwell since childhood but it was thought to be psychological for many years and was treated as such. This was complicated by the fact that I was already showing signs of autism. This was not diagnosed until my fifties and was seen as being “awkward” and deepened the conviction that my problems were purely psychological and behavioural. My parents, like most, believed doctors knew best and did not question their diagnoses. It was their word against mine. The gaslighting began from the start and in early childhood. At ten I was put on the first of what amounted to 46 different drugs, mostly tranquillisers and anti- depressants, which, of course, considerably worsened what were already chemical sensitivities.
I feel it was a combination of genes (several family members, on both sides, have allergies and there are at least three diagnosed cases of autism, including my niece, which have been found to be associated with allergies) and growing up in an industrial South Yorkshire steel/mining town which was full of pollution. This was worsened by starting at a newly built school and various infections such as gastro enteritis, age 8.
In my teens things worsened and I developed, which, what I can now see in hindsight was endometriosis and severe menstrual issues. By the time I was twenty, I had been in two psychiatric hospitals, the first time, age twelve.
I read about allergies from books like ‘Not all in the mind’ by Dr Richard MacKarness and books by Theron Randolph, Dr Mandell and nutritionists like Leonard Mervyn and Adele Davis in my early twenties. I realised that this was my problem and started seeing doctors such as Jonathan Mannerly, Sarah Myhill and Damien Downing in the 1980s but my health continued to deteriorate, as the help they could offer was piecemeal and very expensive. I was too ill to work and couldn’t afford to pay the necessary amounts. The NHS were useless, continuing to say my health problems were psychological and putting down my severe weight loss from extensive food, chemical sensitivities and digestive problems as anorexia. IBS was the only diagnosis I got that turned out to be accurate but was just the tip of the iceberg.
By the time I got in touch with Dr Jean Monro at the Breakspear clinic in 1993, I was only 4 stone 10 and desperately ill. By a stroke of luck and a very understanding GP, who has long since retired, the health authority paid for a long course of treatment there which turned my health right around, providing neutralising vaccines, which I still have, and badly needed infusions. They stopped funding my treatment in 2002 so I now self- fund the bare minimum of treatment.
I read about MCS-Aware in 2005, through Action for ME. I was also diagnosed with ME, in 1991 but not offered any treatment for it. I contacted them by letter and started getting their newsletter which has been a great source of information and still is. It helped me to maintain the environmental controls I started back in the 1990s regarding avoidance of chemical products, cosmetics etc. I still turn to them for advice and find them invaluable. I would be gutted if it were to be discontinued.
There is still a great deal of ignorance and prejudice about MCS and also MCAS. I got a diagnosis of this from Dr Tina Peers last year. Not being able to tolerate the supplements the Breakspear Clinic prescribe and not being able to afford to live in the kind of housing I require, I am presently very ill. MCS-Aware have provided information about chemically free products etc that keep me going, and about neuroplasticity training, which has had success with people like me and which I am keen to try. I feel hopeful about this. They have been by my side since their inception in 2005 and I cannot imagine life without them. I know there are many others like me who would say the same
